Allison posted this. Thanks, Allison. Allison on Thursday, December 02, 2004 - 05:55 am:
"THE FOUR CANDLES"
The Four Candles burned slowly.
Their Ambiance was so soft you could hear them speak...
The first candle said, "I Am Peace, but these days, nobody wants to keep
Then Peace's flame slowly diminishes and goes out completely.
The second candle says, "I Am Faith, but these days, I am no longer
Then Faith's flame slowly diminishes and goes out completely.
Sadly the third candle spoke, "I Am Love and I haven't the strength to
stay lit any longer."
"People put me aside and don't understand my importance. They even
forget to love those who are nearest to them."
And waiting no longer, Love goes out completely.
A child enters the room and sees the three candles no longer burning.
The child begins to cry, "Why are you not burning? You are supposed to
stay lit until the end."
Then the Fourth Candle spoke gently to the little boy, "Don't be afraid,
for I Am Hope, and while I still burn, we can re-light the other candles."
With Shining eyes the child took the Candle of Hope and lit the other
Never let the Flame of Hope go out of your life.
With Hope, no matter how bad things look and are...Peace, Faith and Love
can Shine Brightly in our lives.
http://i.euniverse.com/funpages/cms_con ... andles.swf
Posted: Mon Aug 08, 2005 2:10 am Post subject: Coping With C. Diff
(1) Read all the topics in the FAQ section for a good overview of C. diff. In particular, read Dr. Borody's report on C. diff. Knowledge is power and will help you decide what questions to ask your own doctor.
(2) If you aren't having any luck with "tapering" Flagyl or Vanco., try Lauren's "pulsing" method (posted in the FAQ section).
(3) Follow the tips about hygiene and foods. (Also in the FAQ section). Keep in mind, however, that everyone is different, and different foods bother different people.
(4) Concentrate on other things besides how horrible you feel. Chronically ill people often "fixate" on their problems to the extent that it becomes their whole life. It's easy to do, but while you are sick, you might as well do some "fun" things that you enjoy. Read, exercise, paint, or do whatever is your personal favorite. It might not speed your recovery but will improve your mental outlook, and at least you will have "a life" that doesn't center around your illness.
(5) Exercise is particularly beneficial. Try walking, yoga, lifting weights, aerobics or anything else you can manage. Even people who are debilitated from C. diff. can probably do simple stretching exercises. Exercise strengthens your body and your immune system and helps you cope with and fight any disease. It also keeps your mind occupied.
(6) When you are "out and about," locate the restrooms first in every store or other business. This will help prevent additional stress which often affects the GI tract. We've all heard of athletes who are sick before a race or game or people who become ill before speaking in public.
(7) When you go to your doctor, be professional, polite, and persistant. Enter your personal medical history (briefly) and a list of medications on your computer (double spaced) and print copies. (You can easily alter these to reflect later changes.) It also saves you the time from filling out additional forms in the doctor's office when you are already stressed. I put just my name, DOB, and address on the first page of their form and then attach my copies. If anyone complains, I tell her/him "Look at my writing on the first page. Would you like to read some more like it?" They always say, "No." Several doctors have told me this is a good idea. I also hand him/her a list of questions with my phone # and E-mail address at the bottom and tell them if they don't have time to answer my questions now, I would apreciate them contacting me later. I try to keep my questions brief and categorize them, keep a copy of the questions, go over them with the doctor, and write his/her answers in the margins. If you don't have a computer, hand print or type your information and questions and make copies.
(8) Consider finding another doctor if you feel your doctor isn't listening to you or makes comments such as "You are such an unusual or 'rare' case. Most people get over C. diff. quickly. There must be something else wrong." A second opinion is essential before going through additional invasive tests which have their own risks. For those of you who have more than one or two relapses after being off medication, seek the opinion of a qualified GI. Several of us have listed doctors we had good luck with in the "doctors" section. Be sure and check the "archived section" of doctors' names.
(9) Try to maintain a sense of humor. Being sick isn't funny, but laughing strengthens your immune system. Usually, there is nothing grimmer than an ill person. Even if you feel horrible, you can still laugh. I'll never forget going to Mayo. What a depressing experience! No one laughed, no one smiled. It was grim, grim, grim. My husband and I made what we considered funny comments (quietly) and laughed going down the halls. Everyone looked at us as thought we were taking off our clothes in church! What blasphemy to laugh in a hospital!
(10) Be very cautious about taking other antibiotics during or after C. diff. Some people don't have a problem taking them, but others do. There is no way to predict if you can or can't. Be sure you stress "no antibiotics unless absolutely necessary" to other doctors and follow through by checking meds. with your pharmacist. CindyM just had a experience with this. Read her post on February 3 under "Venting from a Veteran" in General Discussion. Insist on any cultures or othe diagnostic tests that might indicate whether you have a bacterial infection (where you might need an antibiotic) or a viral one (where one isn't necesary).
(11) For stomach pain and cramps, try a heating pad. Set it on the lowest setting first and don't go to sleep with it on as it can cause burns. Many of the newest ones have automatic shutoff valves. The heat is comforting besides soothing the pain. Try Tylenol for pain as it affects your stomach less than other pain meds. There is also an antispasmodic called Levsin, but it is a prescription med. Some doctors recomend using either Imodium or Pepto Bismol. Imodium(loperamide HCI) was considered a "no no" with active C diff. for years because it was thought that it prevented the toxins from leaving the body. Several experts (including Dr. Borody) have said that this is no longer considered true. Both Imodium and Pepto Bismol only help control symptom, however, and don't "cure" the disease. Check using any of these meds. with your own doctor.
(12)Check out these tips with your own physician. This is a support site and not a medical site. The tips here might not work for you -- they are merely personal opinions on what helped get me through four years of C. diff. the first time and then another bout with it two years later.
(13) Remember, C. diff. is treatable and beatable. Unfortunately, in some cases, it takes a lot of time, trial and error, and patience, BUT YOU WILL GET BETTER.
Allison posted this Christmas Eve. Everyone with C. diff. should consult it every day.
Sat Dec 24, 2005 10:48 pm
To all my cdiff friends and family:
A blanket THANKYOU to all supporters - near and far, for reading and contributing to the site... and my warmest wishes for a HAPPY, HEALTHY, HOLIDAY SEASON.
The following is "borrowed" from another dread disease, but there are lessons to be learned here, so thought I would appropriate them for us as well.
For everyone that may be having a particularly hard time right now and are struggling to cope, please pay special attention to # 7, it worked for me and it will also work for YOU. I promise.
THE TEN COMMANDMENTS OF SURVIVING CDIFF
1.Thou shalt regard the words "Clostridium Difficile" as exactly that: some words. Nothing more, nothing less. Cdiff will fall mightily by the way-side in the future as have other fearsome diseases from the past, like smallpox and polio. And thus, too, shall go thy cdiff. The Answer shall come to those who shall be present to hear it. Be present to hear it when it comes.
2.Thou shalt love thy flagyl, vancomycin, questran, rifampin, probiotics and all thy other treatments even as thyself, for they are thy friends and champions. Although they may exact a toll for their endeavors, they are oft most generous in the favors they bestow.
3.Thou shalt participate fully in thy recovery. Thou shalt learn all the details of thy ailment, its diagnosis, its prognosis, its treatments, conventional and alternative. Thou shalt discuss them openly and candidly with thy physicians and shalt question all thou do not comprehend. Then, thou shalt cooperate intelligently, and knowledgeably with thy doctor.
4.Thou shalt regard thy ailment as a temporary detour in thy life and shalt plan thy future as though this detour had not occurred. Thou shalt never, at no time, nohow, regard thy temporary ailment as permanent. Thou shalt set long-term goals for thyself. For thou will verily recover and thy believing so will contribute mightily to thy recovery.
5.Thou shalt express thy feelings candidly and openly to thy loved ones for they, too suffer confusion and misunderstanding. Thou shalt comfort and reassure them for they, too, needest comforting and reassurance, even as thou doest.
6.Thou shalt be a comfort to thy fellow cdiffers, providing knowledge, encouragement, understanding and love. Thou shalt give them hope where there may be none, for in hope lies their salvation. And by doing so, thou providest comfort for thyself, as well.
7.Thou shalt never relinquish hope, no matter how thou may feelest at that moment, for thou knowest, in the deep recesses of thy heart, that thy discouragement is but fleeting and that a better day awaits thee, perhaps tomorrow, perhaps the day after tomorrow.
8.Thou shalt not regard thy ailment as the sum total of thy life but as merely a part of it. Fill thy life with other diversions, be they mundane, daring, altruistic, or merely amusing. To fill thy life with thy ailment is to surrender to it.
9.Thou shalt maintain, at all times and in all circumstances, thy sense of humor, for laughter lightens thy heart and hastens thy recovery. This is not an easy task, sometimes seemingly impossible, but it is a goal well worth the endeavor.
10.Thou shalt have enduring and unassailable faith, whether thy faith be in a Supreme Being, in Medical Science, in Thy Future, in Thyself, or in Whatever. Steadfastly sustain thy faith for it shall sustain thee.
Dorothy posted this description of the emotions that can accompany C. diff. Thanks, Dorothy.
By Dorothy on Sunday, December 07, 2003 - 03:31 am:
I remember that feeling so well. It was like my brain could not think about anything but c-diff all the time.It's like you just wish you could forget for a little while, but you can't. It is very hard for anyone who has not been through it to understand.
I'm here to offer you hope that it does END! I got c-diff last Feb. after the birth of my daughter. I was SICK until June when I did the infusions which cured me right away. Now 6 mos later c-diff is like an old nightmare. I was able to put it behind me in a way that I never thought possible last year. You will too!! It always goes away eventually, I learned that here and there were days when that was the mantra that got me through. I am now healthy and happy, but I have become a c-diff crusader trying to educate people about antibiotics, bowel flora and c-diff. It aint a pretty job , but it needs to be done. I am an ICU nurse, so I have a great forum. The doctors just LOVE how I lecture them!!
Since many people think they are "going crazy," I thought this subject deserved consideration.
Posted by Bobbie on Jul 28, 2005 5:18 pm
Most people continue to question their own judgment about having C. diff. if their doctors doubt their symtoms. If you "feel" you still have it, you probably do. You know your own body better than anyone else -- even a health professional. You need his/her guidance, but you are the one who is ultimately responsible for your own care and the care of your family members or close friends.
Be courteous and professional but persistant when visiting your doctor. You are not "going crazy" (as many people state on this site). You have a disease that is still not well recognized and thus has been ignored for years. Tests are often incorrect or inconclusive.
There have been recent advances, however, due to the increasing cases of C. dff. caused by the flood of new antibiotics and their use. C. diff. has received a lot of publicity lately in the press due to the outbreaks in Canada and Chicago.
Posted: Thu Oct 27, 2005 3:25 pm by Bobbie
Some Ways to Combat Stress
C. diff. can cause a lot of stress. Here are some "stress relievers."
• Practice The "Relaxation Response" And Similar Techniques
• Progressive Muscle Relaxation
• Relaxed Breathing Exercises
• Write About Your Stress
• Deflate The Danger Of Your Fears
• Remove Stressors
• Manage Your Time
• Maintain A Healthy Diet
• Seek Therapy